Abstract
Objective
To explore how people with epilepsy self‐characterize their diagnosis as being epilepsy, a seizure disorder, or neither.
Methods
People diagnosed with epilepsy by epileptologists, responded to two questions: “do you have epilepsy?” and “do you have a seizure disorder?”. Demographic, clinical and patient‐reported outcome measures were extracted from Calgary Comprehensive Epilepsy Program registry. Multivariable multinomial and logistic regression models were used to determine factors associated with self‐perception of the diagnosis.
Results
Of 1684 epilepsy patients who answered both questions, 1231 (73.1%) perceived themselves as having epilepsy, 137 (8.1%) a seizure disorder but not epilepsy, 145 (8.6%) neither of the diagnoses, and 171 (10.2%) as not knowing their diagnosis. On multivariate analyses, factors significantly associated with a higher likelihood of self‐perception as having a seizure disorder versus epilepsy included having focal epilepsy (relative risk ratio [RRR] = 13.1, 95% confidence interval [CI]: 1.7–102.1), and a higher comorbidity burden (RRR = 1.8, 95% CI: 1.3–2.7), whereas self‐perception of having a seizure disorder vs epilepsy was lower in females (RRR = .36, 95% CI: .14–.94) and those taking more antiseizure medications (ASMs) (RRR = .19, 95% CI: .06–.58). Self‐perception of having neither diagnosis was significantly more likely in people with focal epilepsy (RRR = 3.1, 95% CI: 1.2–8.3) and a higher comorbidity burden (RRR = 1.6, 95% CI: 1.1–2.4), whereas the likelihood was lower with a longer duration of epilepsy (RRR = .96, 95% CI: .93–.99), taking a higher number of ASMs, (RRR = .14, 95% CI: .04–.51), having more side effects (RRR = .89, 95% CI: .83–.96), a higher self‐rated severity of epilepsy (RRR = .26, 95% CI: .14–.49), and if the respondent was the patient as opposed to a proxy (RRR = .24, 95% CI: .07–.85).
Significance
In a clinical setting, clinical characteristics, rather than sociodemographic factors, largely explain how people with epilepsy self‐characterize their diagnosis. Markers of higher seizure severity and longer illness duration increase the likelihood of self‐perception as having epilepsy.
Keywords: epilepsy, seizure disorder, self‐identification, self‐perception, stigma
Key points.
Clinical characteristics are the main predictors of patients' perception of their condition.
Patients with higher seizure severity and longer illness duration are more likely to self‐characterize as having epilepsy.
Patients with a higher burden of comorbidity and male sex have a lower probability of self‐identifying as having epilepsy and may benefit from targeted education.
1. INTRODUCTION
The wide‐ranging impact of epilepsy is not only due to the neurologic impairment imposed by seizures, but also to its effects on psychosocial functioning. 1 , 2 , 3 , 4 The diagnosis of epilepsy itself may negatively influence a patient's well‐being. In some studies, half of patients report that the diagnosis of epilepsy negatively influences their lives as a whole. 5
This negative influence extends beyond the direct effects of the disease. The term “epilepsy” itself can be seen as stigmatizing. This transcends national and regional borders, with up to 66% of people with epilepsy reporting feeling stigma in some countries. 6 It is concerning that negative attitudes directed toward people with epilepsy have been reported from teachers, students, health care professionals, and the general public. 6
Both broad cultural beliefs and personal experiences related to the term “epilepsy” can influence diagnostic acceptance. Crucially, the term “epilepsy” acknowledges the condition's complexity, which extends beyond seizures to include associated comorbidities, 3 , 7 and an accurate diagnosis is integral for clinical communication and optimal care. However, patients' enthusiasm for the term may be tempered by social, clinical, and cultural factors. 8 Specifically, people may be concerned that a label of epilepsy may reduce their ability to obtain gainful employment and may negatively influence people's view on their ability to assume productive roles in society. Diagnostic self‐perception may also depend on the person's knowledge about epilepsy and on other factors such as perceived risk of detection. 9 These issues may therefore render a diagnosis of epilepsy challenging to accept. 6 Low diagnostic acceptance in chronic conditions such as diabetes is a strong predictor of poor treatment adherence. 10 Although direct evidence is scarce, existing data support the notion that PWE who accept their diagnosis (i.e., self‐identify as having epilepsy) are more likely to adhere to recommendations for optimal illness management. This is evident in the association between poor adherence to antiseizure medication and the perception that such medication is unnecessary, and poor understanding of the diagnosis. 11 , 12
This study sought to assess the degree to which people diagnosed with epilepsy at a tertiary care center self‐identify with diagnoses of epilepsy, a seizure disorder, neither, or report uncertainty regarding either diagnosis, and to identify factors associated with these self‐identified diagnostic categories. We hypothesized that patients would be more likely to self‐identify as having epilepsy if their epilepsy was of longer duration, their seizures were more severe or frequent, and they had factors indicative of poorer social and work function. Conceivably these factors lead to increasing consequences of the diagnosis and may also increase willingness and opportunity to self‐identify as having epilepsy.
2. METHODS
2.1. Data
The Calgary Adult Comprehensive Epilepsy Program (CEP) is a Level 4 epilepsy center in Western Canada. 13 The CEP clinical registry has previously been described in detail. 14 Briefly, the CEP systematically collects longitudinal data, including demographic, clinical, patient‐reported outcome measures (PROMs), and diagnostic and treatment data on every outpatient clinical encounter since 2007. Data are acquired using standardized forms completed by both patients and staff epileptologists. Of note, patients complete their questionnaires prior to their clinic visits, and patient‐reported data are available to clinicians at the time of the encounter. We included adult patients who were able to self‐complete the questionnaires and also those who required assistance for completion by a proxy. Two questions pertaining to the patients' perception of their diagnosis were introduced in 2016: (1) “Do you have epilepsy?” and (2) “Do you have a seizure disorder?” The response options for each question are “yes”, “no”, and “don't know.”
We restricted our analysis to patients diagnosed with epilepsy. The diagnosis was made in all patients by one of seven specialized epileptologists, using the International League Against Epilepsy (ILAE) consensus definitions. 15 , 16 This analysis spanned data from 2016 (when these diagnostic questions were introduced) to 2024, and focused on patients' self‐perception of the diagnosis, obtained immediately before the clinical encounter with the epilepsy specialist, and prior to any feedback from the epileptologist.
2.2. Outcome and exposure variables
Based on the response options to the two diagnostic questions, patients were grouped into one of four mutually exclusive categories: (1) self‐reporting as having epilepsy regardless of their response to having a seizure disorder, (2) self‐reporting as having a seizure disorder but not epilepsy, (3) self‐reporting as having neither epilepsy nor a seizure disorder, and (4) answering don't know for both epilepsy and a seizure disorder.
Based on clinical acumen and published data 6 we identified 38 variables that might influence a person's diagnostic self‐characterization, broadly grouped into three categories:
Sociodemographic data, including age, sex, marital status (married or common law vs not), driving status, having higher education (above high school), requiring special education, having a paid job, having no income or requiring income support, whether English was their second language (as a proxy for cultural differences), use of tobacco, alcohol, and recreational drugs, and whether the questionnaire was completed by the patient or by a caregiver.
Patient‐reported measures encompassed the following validated, self‐completed questionnaires: the Neurological Disorders Depression Inventory in Epilepsy (NDDI‐E), 17 the Quality Of Life In Epilepsy ‐10‐item (QOLIE‐10) questionnaire, 18 the EuroQol 5‐Dimension, 5‐level (EQ‐5D‐5L) instrument, 19 the Generalized Anxiety Disorder 7‐item (GAD‐7) scale, 20 Single‐item Global Assessment of Severity of Epilepsy (GASE), 21 and the Liverpool Adverse Events Profile (LAEP) scale. 22 In addition, five individual items from the QOLIE‐10 were used to explore different levels of work limitations (Item 4), social limitations (Item 5), physical effects (Item 7) and psychological effects (Item 8) of anti‐seizure medications, and fear of having a seizure (Item 9).
Clinical data included whether the epileptologist's diagnosed epilepsy or non‐epileptic events, duration of epilepsy, monthly frequency of focal aware, focal impaired awareness and bilateral tonic–clonic seizures, type of epilepsy (focal vs generalized), being seizure‐free in the last year, number of antiseizure medications (ASMs), the ATC (Anatomical Therapeutic Chemical)/DDD (defined daily dose) ratio as a measure of ASM burden (sum of prescribed over WHO DDD ratio for each ASM), 23 presence of side effects to ASMs, history of psychiatric disorders, and the epilepsy‐specific comorbidity index. 24 Conditions listed in the epilepsy‐specific comorbidity index include pulmonary circulation disorders, hypertension, cardiac arrhythmias, congestive heart failure, peripheral vascular disease, renal disease, solid tumor without metastases, paraplegia and hemiplegia, aspiration pneumonia, dementia, brain tumor, anoxic brain injury, moderate or severe liver disease, and metastatic cancer. 24
2.3. Statistical analysis
We used parametric and non‐parametric statistics, where appropriate, to perform descriptive analyses for clinical and sociodemographic characteristics and PROMs. We used Cohen's kappa (Ƙ) to assess patient agreement with the physician regarding the diagnosis of epilepsy. Explanatory variables were compared in univariate analyses over the four self‐perceived diagnostic categories (epilepsy, seizure disorder, neither, or don't know). Those achieving statistical significance (p < .05, with Bonferroni correction), plus those judged to be clinically important were entered into multivariate regression models.
Because we were interested primarily in exploring the predictors of self‐perceived diagnoses of epilepsy, a seizure disorder, or neither of the two diagnoses, we built a multinomial regression model comparing the three self‐perceived diagnostic categories, with self‐perceived epilepsy as the base comparator. The 20 independent variables included in the model were age, sex, marital status, driving status, requiring income support, having higher education, epilepsy type, duration of epilepsy, epilepsy‐specific comorbidity index, the ATC/DDD ratio, number of ASMs, Liverpool Adverse Events Profile scale, presence of ASM side effects, GASE scale, NDDI‐E scale, GAD‐7 scale, QOLIE‐10 scale, fear of having a seizure (Item 9), social limitations (Item 5), and the EQ‐5D‐5L.
To explore the association of predictor variables with a response of “don't know” vs any response, we built a logistic regression model comparing those that answered “don't know” to both questions vs those that provided an answer to either question. The independent variables included were age, sex, marital status, having higher education, epilepsy type, duration of epilepsy, number of ASMs, the ATC/DDD ratio, GASE scale, and who completed the questionnaire.
All statistical analyses were performed using Stata 18 SE (StataCorp. 2023. Stata Statistical Software: Release 18. College Station, TX: StataCorp LLC).
3. RESULTS
Of 2081 patients who answered the questions regarding their self‐perceived diagnosis, 1684 were diagnosed with epilepsy by the epileptologists. Among the total sample (n = 1684; Table 1), the median age and duration of epilepsy was 35 years (interquartile range [IQR] 23, 52) and 17 years (IQR 9, 28), respectively, and 854 (51%) were female, 40% were employed, 9.3% had no income, and 43% were unemployed. English was the first language in 79.5%, 14.3% used tobacco, 3.2% used recreational drugs, and 33.8% used alcohol. Mean (standard deviation [SD]) monthly rates of seizures were 2 (18) for focal aware, 1.8 (14) for focal impaired awareness, and .6 (7) for bilateral tonic–clonic. Twenty‐six percent were seizure‐free in the previous year, and 31% had a history of mental health illness. Mean scores (SD) for various scales were NDDI‐E 12.2 (4.6), GAD‐7 scale 6.7 (6.4), QOLIE items for work limitations 69 (38), ASM physical effects 73 (33), and ASM psychiatric effects 74 (33).
TABLE 1.
Clinical and demographic characteristics of the four self‐perceived diagnosis groups.
| Four self‐perceived diagnosis groups | ||||||
|---|---|---|---|---|---|---|
| Epilepsy | Seizure disorder | Neither | Don't know | Total | p | |
| n (%) | 1231 (73.1) | 137 (8.1) | 145 (8.6) | 171 (10.2) | 1684 (100) | |
| Age, m (SD) | 38.6 (17.6) | 38.3 (17.4) | 39.8 (17.3) | 38.5 (17.5) | 38.7 (17.5) | .89 |
| Female, n (%) | 645 (52.7) | 61 (44.9) | 61 (42.4) | 87 (51.2) | 854 (51) | .05 |
| Married/common law, n (%) | 398 (33) | 74 (54.8) | 89 (61.8) | 77 (46.4) | 638 (38.6) | <.001 |
| Does not drive, n (%) | 818 (67.5) | 93 (68.9) | 61 (43.6) | 100 (58.8) | 1072 (64.7) | <.001 |
| Gainful employment, n (%) | 487 (39.6) | 45 (32.9) | 73 (50.3) | 69 (40.4) | 674 (40.0) | .02 |
| No income, n (%) | 114 (9.3) | 10 (7.3) | 12.00 (8.3) | 20 (11.7) | 156 (9.3) | .57 |
| Has job, n (%) | 481 (42.6) | 50 (37.9) | 68 (48.6) | 71 (45.2) | 670 (43.0) | .31 |
| Income support or none, n (%) | 499 (40.5) | 54 (39.4) | 31 (21.4) | 59 (34.5) | 643 (38.2) | <.001 |
| Higher education, n (%) | 447 (38.9) | 62 (47.0) | 76 (53.9) | 84 (52.5) | 669 (42.3) | <.001 |
| Special education needs, n (%) | 294 (26.7) | 22 (16.7) | 13 (9.8) | 29 (18.7) | 358 (23.5) | <.001 |
| English is not second language, n (%) | 880 (79.7) | 103 (78.0) | 111 (81.0) | 123 (77.9) | 1217 (79.5) | .88 |
| Use tobacco, n (%) | 150 (13.9) | 29 (22.3) | 17 (12.8) | 18 (11.7) | 214 (14.3) | .04 |
| Use recreational drugs, n (%) | 32 (3.0) | 3 (2.3) | 6 (4.5) | 6 (3.9) | 47 (3.2) | .71 |
| Use alcohol, n (%) | 371 (33.4 | 40 (30.8) | 51 (37.5) | 56 (35.2) | 518 (33.8) | .66 |
| Generalized epilepsy, n (%) | 411 (36.2) | 13 (11.8) | 23 (18.4) | 20 (14.1) | 467 (30.9) | <.001 |
| Focal epilepsy, n (%) | 723 (63.8) | 97 (88.2) | 102 (81.6) | 122 (85.9) | 1044 (69.1) | |
|
Epilepsy duration (years), m (SD) |
20.8 (15.5) | 15.1 (13.0) | 10.8 (12.0) | 11.5 (10.7) | 18.5 (15.1) | <.001 |
| Seizure frequency/month, m (SD) | ||||||
| Focal aware | 2.5 (21.2) | 1.2 (6.7) | .5 (2.8) | .4 (2.5) | 2.0 (18.3) | .32 |
| Focal impaired awareness | 2.1 (15.8) | 1.6 (12.6) | .4 (2.6) | 1.2 (6.0) | 1.8 (14.1) | .51 |
| Bilateral tonic–clonic | .8 (8.6) | .2 (.4) | .1 (.4) | .3 (2.3) | .6 (7.4) | .51 |
| Seizure‐free in last year, n (%) | 324 (26.3) | 23 (16.8) | 47 (32.4) | 40 (23.4) | 434 (25.8) | .02 |
| Weighted comorbidity index, m (SD) | .22 (.7) | .53 (1.3) | .57 (1.1) | .36 (.9) | .29 (.8) | <.001 |
|
History psychiatric disorder, n (%) |
383 (31.1) | 55 (40.2) | 40 (27.6) | 49 (287) | 527 (31.3) | .09 |
| ASM defined daily dose ratio, m (SD) | 1.63 (1.4) | 1.02 (1.1) | .83 (1.0) | .89 (1.0) | 1.44 (1.4) | <.001 |
|
Mean ASMs taking currently, m (SD) |
1.6 (1.0) | 1.1 (.9) | .9 (.7) | .9 (.8) | 1.4 (1.0) | <.001 |
| Number of ASMs currently, n (%) | ||||||
| 0 ASM | 92 (7.5) | 33 (24.1) | 41 (28.3) | 44 (25.7) | 210 (12.5) | <.001 |
| 1 ASM | 616 (50.0) | 72 (52.6) | 89 (61.4) | 103 (60.2) | 880 (52.3) | |
| 2 ASMs | 352 (28.6) | 24 (17.5) | 9 (6.2) | 16 (9.4) | 401 (23.8) | |
| 3 ASMs | 111 (9.0) | 5 (3.7) | 5 (3.5) | 7 (4.1) | 128 (7.6) | |
| >3 ASMs | 60 (4.9) | 3 (2.2) | 1 (.7) | 1 (.6) | 65 (3.9) | |
| Liverpool Adverse Events Profile scale score, m (SD) a | 37.0 (10.7) | 39.0 (11.9) | 29.2 (9.4) | 34.7 (9.9) | 36.0 (10.8) | <.001 |
| Reports ASM side effects, n (%) | 490 (39.8) | 39 (28.5) | 32 (22.1) | 58 (33.9) | 619 (36.8) | <.001 |
| GASE epilepsy severity, m (SD) a | 2.7 (1.8) | 2.4 (1.6) | 1.4 (1.1) | 2.1 (1.5) | 2.5 (1.8) | <.001 |
| EQ5D‐5L health utility, m (SD) b | .76 (.22) | .72 (.22) | .81 (.18) | .78 (.20) | .77 (.21) | .001 |
| NDDI‐E scale score, m (SD) a | 12.3 (4.6) | 13.0 (4.8) | 11.1 (4.5) | 12.1 (4.8) | 12.2 (4.6) | .01 |
| GAD‐7 scale score, m (SD) a | 7.0 (6.3) | 7.0 (6.2) | 4.7 (5.9) | 6.7 (6.7) | 6.7 (6.4) | .04 |
| QOLIE‐10 scale score, m (SD) b | 48.0 (20.0) | 47.7 (20.0) | 58.7 (17.1) | 51.5 (18.1) | 49.2 (19.8) | <.001 |
| QOLIE work limitations, m (SD) b | 68.5 (37.9) | 64.6 (41.0) | 80.0 (33.5) | 69.2 (38.5) | 69.2 (38.0) | .01 |
| QOLIE social limitations, m (SD) b | 68.1 (34.8) | 65.5 (38.7) | 80.8 (30.8) | 73.0 (34.6) | 69.5 (35.0) | <.001 |
| QOLIE afraid of seizures, m (SD) b | 61.5 (37.5) | 64.6 (36.3) | 83.7 (29.3) | 67.1 (35.0) | 64.3 (37.0) | <.001 |
| QOLIE ASM physical effects, m (SD) b | 71.6 (33.3) | 76.8 (33.8) | 81.8 (29.0) | 73.7 (34.3) | 73.0 (33.2) | .01 |
| QOLIE ASM psych effects, m (SD) b | 72.1 (33.9) | 76.4 (33.6) | 81.5 (29.7) | 76.5 (31.4) | 73.6 (33.4) | .01 |
| Responder is caregiver, n (%) | 279 (23.0) | 25 (18.5) | 19 (13.2) | 24 (14.2) | 347 (20.9) | <.001 |
| Responder is patient, n (%) | 935 (77.0) | 110 (81.5) | 125 (86.8) | 145. (85.8) | 1315 (79.1) | |
Abbreviations: ASM, antiseizure medication; EQ‐5D‐5L, EuroQol 5‐dimension, 5‐level instrument; GAD‐7, General Anxiety Disorder 7‐item scale; GASE, Global Assessment of Severity of Epilepsy single‐item scale; NDDIE, Neurological Disorders Depression Inventory in Epilepsy scale; QOLIE‐10, Quality of Life in Epilepsy 10‐item questionnaire.
Higher scores = worse.
Higher scores = better.
For the purpose of our analyses, we distinguished three groups, those who self‐characterized as having epilepsy regardless of their answer to the other question (“epilepsy” group; n = 1231 (73.1%)), those who self‐characterized as having a seizure disorder but not epilepsy (“seizure disorder” group; n = 137 (8.1%)), those who did not self‐identify with either diagnosis (“neither” group; n = 145 (8.6%)), and those who stated not knowing their diagnosis (“don't know” group; n = 171 (10.2%); Figure 1).
FIGURE 1.
Distribution of self‐identified diagnoses and type of responder.
Of the 1684 patients, 73% self‐characterized as having epilepsy, and the agreement with a self‐characterized seizure disorder was 68.9% (Cohen's kappa = .4). Agreement between the epileptologists' diagnosis of epilepsy and self‐perceived diagnosis was fair for self‐perceived epilepsy (K = .21) and poor for self‐perceived seizure disorder (K = .15) and neither (K = .07).
3.1. Univariate comparisons of all self‐perceived diagnostic categories
Pair‐wise univariate comparisons are summarized in Table 1. After adjusting for multiple comparisons (requiring a nominal p value of .001), there were no statistically significant differences among the four groups (Table 1) in age, gender, having gainful employment or a job, English being their first language, using tobacco, recreational drugs or alcohol, monthly rates of any seizure type, being seizure‐free in the preceding year, having a history of mental health disorder, scores of NDDI‐E scale, GAD‐7 scale,QOLIE‐10 items for work limitations, and ASM physical or psychiatric effects.
On the other hand, several statistically significant differences emerged among the four groups in univariate analyses after correcting for multiple comparisons. The largest apparent differences occurred between the self‐characterized “epilepsy” and the “neither” groups, with markers of worse sociodemographic and clinical function in the epilepsy group. These included: being married/common law (epilepsy 33%, neither 62%), not being able to drive (epilepsy 68%, neither 44%), requiring income support (epilepsy 41%, neither 21%), having higher education (epilepsy 39%, neither 53%), requiring special education (epilepsy 27%, neither 10%), having focal epilepsy (epilepsy 64%, neither 82%), mean duration of epilepsy (epilepsy 21 years, neither 11 years), epilepsy comorbidity index (epilepsy .22, neither .57), ASM ratio of DDD (epilepsy 1.6, neither .8), not taking ASMs (epilepsy 7.5%, neither 28%), reporting ASM side effects (epilepsy 40%, neither 22%), mean GASE epilepsy severity (epilepsy 2.7, neither 1.4), health valuation in EQ‐5D‐5L (epilepsy .76, neither .81), QOLIE score (epilepsy 48, neither 59), QOLIE social limitations (epilepsy 68, neither 81), QOLIE fear of seizures (epilepsy 62, neither 84), and questionnaires being completed by proxy (epilepsy 23%, neither 13%).
Univariate pairwise comparisons limited to the “epilepsy” and “seizure disorder” (Table S1) groups revealed only four statistically significant differences after Bonferroni correction. The “seizure disorder” group, compared to the “epilepsy” group, was more likely to be married or common law (55% vs 33%, respectively), more likely to have focal epilepsy (88% vs 64%, respectively), less likely to have generalized epilepsy (12% vs 36%, respectively), had a higher comorbidity index (.53 vs .22, respectively), and had a lower ASM ratio of DDD (1.0 vs 1.6).
3.2. Multivariate predictors of self‐characterization as “epilepsy” vs “seizure disorder”
The multinominal regression model comparing self‐perceived diagnoses of “epilepsy,” “seizure disorder,” and “neither” with the “epilepsy” group as the base comparison yielded an adjusted R‐squared of .31 (p < .001; Table S2a). Four statistically significant predictors emerged in the comparison between the “seizure disorder” and “epilepsy” groups (Table 2, Figure 2A). Having focal epilepsy was associated with a 13.1 times higher relative risk of self‐perception as having a “seizure disorder” compared to “epilepsy” (relative risk ratio [RRR] = 13.1, 95% confidence interval [CI]: 1.7–102.1). For each 1‐unit increase in the epilepsy‐specific comorbidity index (i.e., higher comorbidity), there was a 1.8 times higher relative risk of self‐perception as having a “seizure disorder” compared to “epilepsy” (RRR = 1.8, 95% CI: 1.3–2.7). On the other hand, being female was associated with a 63.9% decrease in the relative risk of self‐perception as “seizure disorder” compared to “epilepsy” (RRR = .36, 95% CI: .14–.94). Finally, for each 1‐unit increase in ASM DDD, there was an 81% decrease in the relative risk of self‐perception as “seizure disorder” compared to “epilepsy” (RRR = .19, 95% CI: .06–.58).
TABLE 2.
Statistically significant predictors of self‐perceived diagnoses on multivariate analyses.
| RRR | SE | LCI95 | UCI95 | p | |
|---|---|---|---|---|---|
| “Seizure disorder” vs “epilepsy” a | |||||
| Female | .36 | .18 | .14 | .94 | .04 |
| Focal epilepsy vs generalized | 13.14 | 13.74 | 1.69 | 102.06 | .01 |
| Higher epilepsy‐specific comorbidity index | 1.83 | .36 | 1.25 | 2.69 | <.001 |
| Higher ASM Defined Daily Dose Ratio | .19 | .11 | .06 | .58 | <.001 |
| “Neither” vs “Epilepsy” a | |||||
| Focal epilepsy vs generalized | 3.10 | 1.55 | 1.16 | 8.25 | .02 |
| Longer epilepsy duration (years) | .96 | .02 | .93 | .99 | .01 |
| Higher epilepsy‐specific comorbidity index | 1.60 | .33 | 1.06 | 2.41 | .02 |
| Higher number of ASMs taking currently | .14 | .09 | .04 | .51 | <.001 |
| Higher Liverpool AdverseEvents Profile score | .89 | .03 | .83 | .96 | <.001 |
| Higher GASE ‐ epilepsy severity | .26 | .08 | .14 | .49 | <.001 |
| Responder is patient as opposed to proxy | .24 | .16 | .07 | .85 | .03 |
| “Any response” versus “Don't Know” b | OR | SE | LCI95 | UCI95 | p |
|---|---|---|---|---|---|
| Focal epilepsy versus generalized | .33 | .09 | .19 | .57 | <.001 |
| Longer epilepsy duration (years) | 1.04 | .01 | 1.02 | 1.07 | <.001 |
Abbreviations: ASM, antiseizure medication; GASE, Global Assessment of Severity of Epilepsy; OR, odds ratio; RRR, relative risk ratio.
<1 is less likely and >1 is more likely to self‐characterize as “seizure disorder.”
<1 is less likely and >1 is more likely to provide a response, vs answering “don't know.”
FIGURE 2.
(A) Statistically significant predictors of self‐perception of “seizure disorder” vs “epilepsy.” (B) Statistically significant predictors of self‐perception of “neither diagnosis” vs “epilepsy.”
3.3. Multivariate predictors of self‐perception as having “neither” of the diagnoses vs “epilepsy”
The multinomial model (Table S2b) yielded seven statistically significant predictors of patient self‐perception of having “neither” of the diagnoses vs having “epilepsy” (Table 2, Figure 2B). Two factors were associated significantly with an increased probability of self‐perception of having neither of the diagnoses. Focal epilepsy had a 3.10 times higher relative risk (RRR = 3.1, 95% CI: 1.2–8.3); and each 1‐unit increase in the epilepsy‐specific comorbidity index carried had a 1.6 increase in relative risk of self‐perception as “neither” compared to “epilepsy” (RRR = 1.6, 95% CI: 1.1–2.4). Four factors were significantly associated with a decreased probability of self‐perception as having neither of the diagnoses. Each 1‐year increase in epilepsy duration decreased the relative risk of “neither” by 4.1% (RRR = .96, 95% CI: .93–.99). For each additional ASM, the relative risk of “neither” decreased by 86% (RRR = .14, 95% CI: .04–.51). For each 1‐unit increase in the Liverpool Adverse Events Profile scale score, the relative risk of “neither” decreased by 11% (RRR = .89, 95% CI: .83–.96). For each 1‐unit increase in the GASE (epilepsy severity) score, the relative risk of “neither” decreased by 74% (RRR = .26, 95% CI: .14–.49). When the survey was completed by the patient (as opposed to a proxy), there was a 76% decrease in the relative risk of identifying with “neither” compared to “epilepsy” (RRR = .24, 95% CI: .07–.85).
3.4. Univariate predictors of patients responding “don't know” to both diagnoses
The pairwise univariate comparisons of people answering “don't know” to both diagnostic options vs those who provide an answer (Yes or No) to either of the diagnoses, yielded several significant differences after adjusting for multiple comparisons (requiring a nominal p value of .001; Table S3). Fewer patients answering “don't know” had generalized (vs focal) epilepsy (14.1% vs 42.7%); epilepsy duration was shorter in the “don't know” group (11.5 vs 19.3 years); the ASM DDD ratio was lower in the “don't know” group (.89 vs 1.5); and the self‐rated epilepsy severity mean score (GASE scale) was lower in the “don't know” group (2.08 vs 2.57).
3.5. Multivariate predictors of patients responding “don't know” to both diagnoses
The logistic regression model included 10 variables and had a moderate goodness of fit (McFadden's pseudo‐R‐squared = .11; Table S4). Only two variables emerged as significant predictors of responding “don't know” to both questions (Table 2). Compared with people with generalized epilepsy, those with focal epilepsy were about 67% less likely to provide a response to either of the diagnoses (“epilepsy” or “seizure disorder”; odds ratio [OR] = .33, 95% CI: .19–.57). For each 1‐year increase in epilepsy duration, the odds of providing a response to either of the diagnoses vs responding “don't know” increased by 4.5% (OR = 1.045, 95% CI: 1.02–1.07).
4. DISCUSSION
There has been longstanding interest in the most appropriate terminology for the diagnosis of epilepsy from the perspective of people with the condition and of health care providers, to the extent that diagnoses may entail labeling and contribute to stigma. Health care providers striving to foster awareness of epilepsy and increase availability of resources for care and research suggest specific terminologies. For example, the International League Against Epilepsy (ILAE), representing health care professionals worldwide recommend considering epilepsy a disease, rather than a disorder because the latter implies a lesser disturbance rather than a longstanding and serious condition. 25 Moreover, the term epilepsy is preferred over “seizure disorder” to denote a long‐term susceptibility to have recurrent, unprovoked seizures and to encompass the neurobiologic, cognitive, and psychosocial impacts of the disease, as delineated in the official definition of epilepsy. 16 On the other hand, people with epilepsy, caregivers, and non‐governmental organizations concerned about the psychosocial impact of the name epilepsy may shun its use. Studies have indicated that most people with epilepsy and caregivers did not want epilepsy to be labeled a “disease” and favored the term “condition” instead.
Several authors have studied the issue of how to refer to a person with epilepsy, exploring terms such as “epileptic,” “epileptic person,” and “person with epilepsy.” 26 , 27 , 28 These studies have found that terms like “epileptic” are disfavored and carry more stigma. Although this research focuses on external labeling and its impact on stigma, our study takes a different yet complementary approach. We investigate the internal self‐perception of individuals with epilepsy, examining whether they perceive themselves as having epilepsy, a seizure disorder, or neither, and what factors might influence this self‐perception.
This distinction is crucial because although external labeling affects societal attitudes and enacted stigma, self‐perception relates more closely to felt stigma and an individual's internalized views of their condition. Our research sought to provide insights into how self‐perception influences and is influenced by various aspects of life with epilepsy, such as mood, quality of life, sociodemographic, and clinical aspects. By understanding both external labeling preferences and internal self‐perception, we can develop more comprehensive strategies to address stigma and improve psychosocial outcomes for people with epilepsy.
Self‐perception of the diagnosis also has important epidemiological implications. In a population‐based study in the United States, Kroner et al. explored whether patients self‐reported as having been diagnosed with epilepsy or a seizure disorder. Researchers found that prevalence estimates of epilepsy would more than double (from .54% to 1.3%) if people self‐reported as having a seizure disorder rather than epilepsy. They also found that the term “seizure disorder” was significantly more likely to be used by people of color, females, respondents ≥50 years, those with lower levels of education, respondents who lived alone and in low‐income neighborhoods, and those who resided in an area for at least 5 years. 8
Our questions did not ask about being diagnosed with a condition, but rather what respondents thought their diagnosis was, regardless of how they arrived at this opinion. This is important because our population is composed of patients seen at a specialized epilepsy care referral center, and these patients had received medical care elsewhere prior to being referred to our clinic. Our working hypothesis was that sociodemographic factors similar to those found by Kroner et al., 8 in addition to clinical and self‐reported outcome measures, would help explain a differential self‐perception of having epilepsy, a seizure disorder, or neither diagnosis. We found that 73.1% of patients self‐characterized as having epilepsy, and there was a high level of agreement with also self‐characterizing as having a seizure disorder (Kappa = .4), suggesting that many patients either did not distinguish between the two diagnoses or perceived themselves as having both.
Although univariate analyses identified numerous clinical and sociodemographic potential predictors of self‐perceived diagnoses, only a handful remained significant after adjusting in multivariate analyses. Notably, most variables predicting self‐perception as having epilepsy (as opposed to a seizure disorder) pertained to clinical indicators reflecting more outwardly obvious seizure semiology (generalized seizures), and more difficult to control seizures (higher number of ASMs). The multivariate predictors for self‐perception as having epilepsy, as opposed to neither of the conditions were also largely of a clinical nature, that is, generalized epilepsy, larger number of ASMs and side effects, longer duration of illness, and higher self‐perceived severity.
The finding of a higher somatic comorbidity burden predicting a lower probability of self‐perception of having epilepsy was somewhat counterintuitive. However, this finding held both for the comparison of epilepsy with a seizure disorder, and epilepsy with neither diagnosis. It appears that patients with epilepsy who have a larger number of comorbid conditions and more serious comorbidities are less likely to perceive that their seizures are caused by epilepsy or that they have a seizure disorder. This association might have several explanations, including the patients' perception that their seizures are a byproduct of their other illnesses and not a diagnosis on their own, by a decreased emphasis on seizures among the myriad of their medical conditions , or because other comorbidities may be more overtly and continuously experienced than seizures. It does indicate, however, that these patients could benefit from more targeted education about their epilepsy in the context of comorbid conditions.
Notably, none of the potential markers of sociodemographic disadvantage emerged as predictors of self‐perceived diagnoses after adjustment in multivariate analyses. For example, we had anticipated that patients who were able to drive, had gainful employment, and required less social assistance would be less likely to self‐characterize as having epilepsy and would prefer a diagnosis of seizure disorder, or neither, but this did not hold true in our population. Conceivably, in patients who are referred to a specialized epilepsy center, clinical variables explain their self‐perceived diagnosis, whereas sociodemographic variables play a secondary role. A notable exception was the patients' sex, women were more likely to self‐identify as having epilepsy as opposed to a seizure disorder. This may reflect a stronger resistance among males to self‐identify as having epilepsy, which may constitute an opportunity for targeted education. It may also require closer attention to aspects of adherence to treatment, which decreases when diagnoses are not accepted.
Our study has several strengths. Because our program is a regional referral center for the southern region of the province of Alberta, we captured the majority of patients in this region who were referred to a specialized epilepsy program. The study also benefited from the epileptologist's diagnosis as the reference standard for the diagnosis of epilepsy, rather than self‐reported screening tools or non‐epileptologist diagnosis. Finally, data were collected systematically at the first encounter with our clinic, and we captured a range of patient‐reported outcome measures.
Limitations of our study include the selected sample, which restricts its applicability to the general population. Patients had a long duration of illness, and one third of patients were taking two or more ASMs. This could have resulted in a higher proportion of patients self‐identifying with a diagnosis of epilepsy (73%) than would be seen in less specialized centers. We restricted ourselves to a cross‐sectional analysis involving the first clinical encounter and thus were unable to assess the impact of the clinical encounter on subsequent self‐perception of the diagnosis, or its evolution over time. For the same reason, we were unable to assess the contribution of poor knowledge or misperceptions on the self‐characterization of diagnoses, and to what degree they are amenable to change following specialist consultation and appropriate transfer of information. These aspects will constitute a separate set of analyses. It is also important to note that although patients may self‐perceive as having epilepsy in a health care setting, they may still disclose this differently in other contexts, given the stigma associated with the diagnosis of epilepsy. This remains an area for further exploration.
5. CONCLUSION
Patients diagnosed with epilepsy referred to a specialized center exhibit diverse perceptions of their condition. In our sample, most patients self‐perceived their diagnosis as epilepsy or a seizure disorder (73%), but an important minority did not know which diagnosis to identify with (10.2%) or perceived themselves as having neither of the diagnoses (8.6%). In multivariate analyses, apart from female sex, all predictors of the self‐perceived diagnosis pertained to clinical aspects of epilepsy; in particular, markers of higher epilepsy severity and treatment intensity. A higher burden of comorbidity and male sex predicted a lower probability of self‐characterizing as having epilepsy and may constitute groups that benefit from targeted education. Further analyses should explore change over time in self‐perceived diagnoses and their determinants.
AUTHOR CONTRIBUTIONS
Farnaz Sinaei: design of the project, analysis, and interpretation of data, and drafting of the manuscript. Colin Bruce Josephson: conception and design of the project, interpretation of data, and revising of the draft critically for important intellectual content. Samuel Wiebe: conception and design of the work, interpretation of data, and revising of the draft critically for important intellectual content. All authors reviewed and edited the content and approved the final version of the paper prior to submission.
FUNDING INFORMATION
This project was unfunded.
CONFLICT OF INTEREST STATEMENT
F.S. has nothing to declare. C.B.J. has received unrestricted educational grants from UCB Pharma Inc. and Eisai Inc. for work unrelated to this project. S.W. has received unrestricted educational grants on behalf of his institution from UCB Pharma, Paladin Labs, Jazz Pharma, and Eisai for work unrelated to this project and has served on advisory boards of Paladin Labs and Jazz Pharma. He has received speaker's fees from Torrent Pharma and Biopas Labs, for topics unrelated to this project. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
ETHICS STATEMENT
This analysis forms part of a Quality Improvement Project initiative approved by the University of Calgary's Conjoint Health Research Ethics Board. All eligible patients attending the clinic (or guardians of patients) provided written informed consent. All data were collected, managed, stored, and extracted using REDCap electronic capture tools hosted at the University of Calgary's Clinical Research Unit.
Supporting information
Data S1.
ACKNOWLEDGMENTS
Nil.
APPENDIX A.
The Calgary Comprehensive Epilepsy Program Collaborators are Guillermo Delgado‐Garcia, Paolo Federico, Colin Josephson, Karl Martin Klein, Nathalie Jette, Andrea Salmon, Shaily Singh, and Samuel Wiebe.
Sinaei F, Josephson CB, Wiebe S. Do you have epilepsy, a seizure disorder, or neither? Patients' perception of their diagnosis in an epilepsy clinic. Epilepsia. 2025;66:2954–2965. 10.1111/epi.18441
Contributor Information
Samuel Wiebe, Email: swiebe@ucalgary.ca.
the Calgary Comprehensive Epilepsy Program Collaborators:
Guillermo Delgado‐Garcia, Paolo Federico, Karl Martin Klein, Nathalie Jette, Andrea Salmon, and Shaily Singh
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data S1.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.